Tuesday, April 22, 2014

Update

A few people have asked how things are going. If I am feeling better. If I think the medicine is working. If it is helping. 


The short answer is no. 


The problem changes from day to day. 

Some days I have terrible breakouts. 

Others, I am sick and tired. Or sick, but not tired. Or not sick, but so very tired. 

Some days I have shooting pain behind my eye. Others, the pain is in my entire head and neck and shoulders. 

Some days I feel like the act of breathing will make me vomit. I try to hold my breath. Pretend I don't need air. Try to convince myself that the motion of taking in air and then expelling it like any normal person won't make me physically ill. Like my stomach doesn't feel like it is revolting. 

Some days, my body just hurts. 

I am exhausted, but I can't sleep.

If I am hungry, I am all too aware that eating just gives my stomach something to expel. 

But most days, I'm not hungry. 

I struggle to consume enough calories each day. I resort to eating something nutritionally terrible, so that I can be done with eating. 

I keep reading all the things that people with autoimmune diseases say they can't eat anymore and I wonder what on earth they do eat.

Go gluten free. Don't consume sugar. or dairy. or eggs. or carbs. or fats. or blah blah blah. The highly recommended diet is Paleo. However, one of their main sources of food is eggs... So there ya go.

The thought of all of the work that goes into what I should and should not, can and cannot eat make me want to just be fed intravenously. The whole joy of eating, of savoring food has been ripped away. 

I am tired. I don't understand how people live this way all the time. 

I don't understand why I have to live this way from now on. 

I can't wait to get back to the Endo's office so that I can rip into him with my million and one questions. Make up for lost time. That time he should have spent with me when he diagnosed me... in his office, not in a letter. Reassuring me and answering any questions that I might have. 

It is hard for people to understand all of this about me. When you look at me, I don't appear ill. I haven't had a stroke or broken a leg or had any lengthy stay in a hospital. In fact, long ago, when this illness wasn't yet understood, people who had it were sent to asylums. It is often thought that it is all in our head. As long as it took me to get a doctor to listen to me, I can understand why people began to think they were crazy. If you know anyone with something "invisible", be it Grave's or Fibromyalgia, or Hashimoto's or anything to do with autoimmune illness, please don't assume that because you can't see it, they can't feel it. That is something I never truly understood until now. 

Thank you for staying with me through my ramblings. Please let me know if you have a question. 




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